February 14, 2018 at 8:18 pm #31319
Let me start by saying that I am hesitant to post on this message board since I have read many negative stories which don’t help a very anxious and depressed person believe a treatment will work. However, there seems to be others here for which treatment was very successful.
I have always been pretty responsive to SSRIs and I am lucky in that regard. However, my current SSRI has pooped out and left me high and dry. I have tried all of the SSRIs and while I guess I could go back to one that has worked in the past and pray it still works, my brain may already be used to its effects. I am telling you this because I believe there is a correlation between being responsive to medication and the odds of rTMS working. Let me know if I am wrong there but I thought I read that in my research. I have never tried a TCA so maybe there is hope there.
Since my anxiety is so bad, my doctor has started me on a low frequency right side brain treatment. I have undergone 8, 50 minute sessions so far. I get pulsed once per second so that’s 3000 pulses per session. I know 8 treatments is early on in the course, but I don’t feel any different. I thought I may have felt something after the first 3 or 4 treatments, but I guess not as nothing has persisted. My doctor says some patients do feel partial relief from anxiety with the right-side protocol after 3 or 4 treatments but I guess I am not one of them at this point. My anxiety will get so bad that I lose it and cry hysterically. I get the dread feeling and crawling in my skin that I just can’t take it anymore and the waterworks come on. It’s my body’s way of releasing the tension I guess. I get so bad that I want to be hospitalized just so they could sedate me but I know that won’t do much in the long run.
I have depression too as do most people here. From what I have read, the low frequency stimulation can help depression too which brings up my next concern. If I am getting right-side treatment only and conventional wisdom says left-side for depression, am I wasting my time? I know how bad the anxiety is but I am wondering if that is from the depression. To be honest, it’s been my anxiety in the past which has been an issue so I understand the doctor treating it this way. We will revisit and do another brain-mapping next week at treatment 13 I believe and discuss if anything needs to be adjusted. I am just worried now that if we do switch to the left side I won’t have enough treatments to tell if it will work.
Because of the mindset that I am in, I don’t feel like TMS will work but I plan on following it through. It’s a horrible feeling to have no hope and that’s probably the worst part of all of this. I feel like I am never going to get better and lose all of the things I worked hard for. My girlfriend has been very supportive but I hate crying like a baby in front of her. Depression and anxiety make me feel so selfish at times.
Anyway, let me know your thoughts about my treatment and what I can expect. I know I have only done 8 treatments, but I was hoping to feel something because of the protocol we are using.
Thank you.February 17, 2018 at 1:52 pm #31333
I have only had left side treatments 19 now. I was more depressed than anxious going into this, although I can relate to the anxiety you describe. My experience and understanding is that anxiety and depression are twin sisters. I also respond very quickly to SSRIs but the effects are short lived, and the side effects are unacceptable. I also responded very quickly to TMS, but am worried that the effects may be as short lived as SSRI treatment; too soon to tell. I found Cognitive Behaviorial Therapy (CBT) techniques to be helpful in managing my anxiety. It’s not a cure, but I found it helpful to learn how to identify the thoughts that were causing the anxiety, and then try to logic them away. Just knowing the crazy, skin-crawling feelings weren’t coming out of nowhere helped. It is the same flawed thinking that leads to depression. My understanding from talking to my doctor is that the TMS treatments are supposed to strengthen/activate the part of the brain that gives you more control over those automatic negative thoughts, CBT calls them ANTS, which I find totally appropriate since that’s how anxiety feels-like ants crawling under my skin. I was hospitalized 8 years ago, depressed but primarily my anxiety was off the charts. They pushed a lot of drugs that had side effects that would have disabled me, still very angry about that, but also pleased that I had enough sense not to go down that path. The CBT techniques I learned in the hospital however were/are very helpful, despite the asshole doctor telling me they wouldn’t be without all the drugs. I also found an EMDR (sorry I don’t know what the letters stand for exactly) therapist a few years ago and that has been life changing. EMDR is for treating PTSD and it is VERY effective. I had one of those horrendously traumatic childhoods that so many of us dealing with depression and anxiety came out of. My understanding is that PTSD memories are different than regular memories and when they are triggered the anxiety can be off the charts. What EMDR does is reprocess those memories, run them back through the hippocampus, and change them into regular memories which are different from trauma memories. I’ve read a lot about it, am definitely not an expert on the science of it, but I’ve experienced it and I can attest to its effectiveness. I’m 58 and I can say that up until the EMDR all the childhood shit was like a bunch of exposed electrical wires in my brain jolting me any time I touched one. Treating the PTSD lowered my anxiety beyond belief. My EMDR therapist discouraged my getting TMS treatment a year ago, she wanted me to give the work with her more time. I didn’t want to disappoint her, she’s been amazing, but I still struggle with depression and I don’t think talk therapy will fix a broken brain. Depression is an illness and I’m hoping that TMS will jump start the areas of my brain that need to function better. So, just like advocating for myself with the doctor who wanted to chemically lobotimize me, I had to also tell my therapist that I’m going to give this TMS a try. Advocate for yourself, if the right side treatments aren’t working then try the left. I had significant improvement after just six treatments. I think a lot of the negativity about TMS may be that expectations are too high. I don’t think it’s going to be THE magic pill that cures all, but I do think it’s one more thing that can help in the battle to feel okay. Just don’t give up, keep fighting the fight. I think of it as an adventure; like a video game quest, I’m collecting swords and powers to help me slay the demons, it can be scary but I am getting stronger. You will too. Good luck and God bless.February 18, 2018 at 7:06 pm #31335
Hi Stingray_2014. I commend you on seeking TMS treatment and this forum. This forum has gotten me through some of the scariest parts of treatment. 50 minute sessions seems high to me; I have been using Brainsway Deep TMS which are 20 minute sessions. Please keep pushing through it. There are times where you will want to quit and want to stop treatments abruptly. Please don’t. I found that my anxiety started to be more intense for the first few weeks but it seems to have leveled back out to its “normal” level which of course isn’t as “normal” as anyone would like. Haha.
Sometimes patients will undergo an additional round of treatments (not 32 or 36 usually) to treat the other side of the brain as that side has to do with anxiety more and it can level people out.
Keep on keeping on.February 19, 2018 at 6:28 pm #31342
While 50 minute treatments may seem like a lot, I am only getting 1 low frequency pulse per second. That is why it takes so long. My doctor is trying to slow down the anxious part of my brain as opposed to stimulating it like a shorter burst of high frequency waves would. That’s the theory anyway. I am also using the Neurostar machine so it’s a bit different.
My anxiety seems to be going up and down and it’s frustrating. I seemed to have a better day on Friday. My skin wasn’t crawling and when I would think of things, I wasn’t overwhelmed with dread or anxiety. Then Saturday came around and I cried after my morning walk but I feel like this particular crying instance was more from depression and sadness. However, I do cry as a release when my anxiety becomes overwhelming. I weep like a baby and it somehow releases some of the tension I experience. I understand it’s therapeutic but I can’t really be crying at work. After I cried on Saturday, I did a bit better. Sunday wasn’t a bad day which is weird since Sunday’s have been my “sad” day since I was a kid. I put sad in quotes since I wasn’t really sad, but I would hate that the weekend was ending. Anyway, I was more of myself on Sunday and was somewhat hopeful that the treatment could finally be working. Unfortunately, today is not going to well. I had treatment 11 this morning and I explained my feelings to the TMS technician who is very sweet. She told me to try to focus on the moments of partial relief, even if they don’t last and hope they will become longer-lived.
Does this seem normal to you for treatment as far as the ups and downs? I thought once the treatment was working, each day would be a bit better than the last. It’s so difficult that each day is unpredictable like this and it really takes a toll on me. Also, please note that I am being treated on my right side already which is for the anxiety. We haven’t done the standard left-side treatment yet. Since anxiety seems to be so prevalent in me, my doctor started on the right-side in the hopes of addressing it first and then going after the left side with standard treatment. In a sense, we are doing my treatment in reverse of what others get. I hope that makes sense to you. I meet with the doctor on Wednesday to discuss my progress and then get a remap on Friday. I wish you the best.February 19, 2018 at 6:49 pm #31343
Thank you for all of the useful information and sharing your journey. I wish this was a forum I never had to visit or concern myself with, but these are the dice we have been dealt I guess.
The last SSRI I was on lasted about 5 years so this is my first poop-out so-to-speak and I am devastated because of it. How quickly did you respond to TMS? I have been a bit up and down. I am getting treated for anxiety at the moment on my right-side but I meet with the doctor this week for a discussion and remapping and we may do the standard left-side treatment as well. I had a better day on Friday, cried on Saturday but then mellowed out, and then had a decent day on Sunday. However, now that Monday has come around, I am not doing so well. I had my 11th treatment this morning and I am feeling bad again. The technician wants me to focus on the partial relief I have been getting, even if it’s only temporary in the hopes it will become more permanent. It’s easier said than done of course.
I have had talk therapy before but never CBT. They are recommending that I do CBT as well but it’s hard to make time at the moment since I still work and now I have these daily TMS treatments at 9:00 AM each morning. I would like to get to a better place with TMS and then really devote time to CBT.
I haven’t been hospitalized but it’s one of my fears that I will lose control so bad that I will have to go to one. One of the fears of a hospital is being put on real heavy duty medications and being a zombie. I am on a small dose of Seroquel right now which I don’t like and I don’t want anymore. Although the SSRIs have side-effects, I was totally willing to live with them since they helped me feel pretty normal. In fact I wish my SSRI was still working so I didn’t have to be going through all of this now.
Anyway, I will have to look into EMDR as well as I haven’t heard of it. I am sorry to hear about your childhood and how traumatic it is. My childhood was okay I suppose. I did have a traumatic health scare in which this anxiety seemed to start when I was 17. I have been in a state of depersonalization since then which the doctors don’t understand. I don’t know if you suffer from that as well.
I am glad you had an improvement after 6 treatments. It kind of scars me that I thought I felt some improvement, but now it’s mostly gone and I have had my 11th treatment today. I know we have different treatment protocols. The doctors seemed to think that anxiety responds more quickly than depression, especially since I am getting right-side treatments, but I don’t know if it’s working or not. I am just so fearful that TMS won’t give me any relief and I won’t know what to do besides start the medication go-around again with a different class. I meet with my doctor this week to discuss my progress and then a remapping as well. Maybe we will do bilateral treatments as well.
I am glad to hear it is helping you.February 19, 2018 at 7:30 pm #31344
I know things are hard, I know many things feel impossible, I know things are dark. There are many ups and downs and obviously TMS testimonials don’t address the real full experience of TMS. 4-6wks my ass… It is very courageous of you to seek TMS treatments and to use this forum. This forum has helped me during the darkest week of TMS and has helped me when I began to doubt TMS, doubt myself and second guess TMS and myself.
It isn’t one straight line from the first TMS treatment to the last. The “Dip” is “classic” but your experience is your experience. Within my first week of TMS, I wanted to quit; it felt too much it felt like it would be impossible for me to get through. That others could but not me, no, not me.
Being open with your pdoc and technician is important; they are there to support you!
I’ve heard that when TMS is used for anxiety and depression the depression is usually treated first then the anxiety.February 19, 2018 at 8:27 pm #31345
Yes, things do feel impossible. I am utilizing all of my energy to hold back the tears that build up as I use all of my strength to hold back this anxiety or whatever else it is.
I don’t think I am experiencing the classic “dip” which I have read so much about. I have only heard of the dip happening with the left-side treatment which I am not receiving at the moment although I guess it’s possible. Not nearly as much research has been put forth with the right-side treatment for anxiety although early results look promising. To me, a dip would indicate feeling better, then worse, right? I sort of just feel as crappy as when I started but with a couple of better days mixed but then back to where I started. I hope that makes sense. Remember, we are trying to “slow down” the anxiety center of my brain with the low frequency strategy. I think the dip tends to occur because dormant parts of the brain in depressed people who get the higher frequency left side treatment wake up and rebuild circuits which can be very stimulating. That’s my limited understanding of it anyway.
I meet again with the psychiatrist who is responsible for my treatment on Wednesday of this week and I will do my best to explain what is happening. When initially starting, he said patients with anxiety usually feel a little bit better after 3-4 treatments but not everybody. That sort of feels like a kick to my gut at the moment as I have 11 treatments including today. I just feel like something else is wrong. Yes, I know that is very cliche of anxiety/depression disorders, but I am so tense and like shaky that I wonder if I have some sort of endocrine disorder that has been missed. It’s like I can feel some gland inside of me excreting too much of something whether it’s adrenaline or cortisol or some hormone being under-produced. I just feel dead in my head as well.
Yes, with TMS, depression is usually treated first as it’s what’s TMS is FDA approved for. However, this doctor is very progressive and seems to be passionate about TMS being used for GAD and other disorders as well. To that extent, and after interviewing me and deciding that anxiety was my most distressing problem, he wanted to start the right-side treatment first. He wants to try to quell the anxiety first since treating the left side for depression seems to unleash a lot of anxiety in many people. I don’t know what to think at this point honestly. Anxiety has always seemed to be my primary issue when all of my problems started long ago. I do seem to have a cycle though. My anxiety is worse as the day gets started until mid-afternoon/early evening, and then seems to dip and be more manageable. I just feel like a puzzle in 1000 pieces and nobody really knows which piece goes where.February 19, 2018 at 10:28 pm #31347
I know. It’s hard. I know it’s hard. Yeah I don’t know where the people who said they felt better in 2wks are but they supposedly exist. Things DO feel lighter and like SLIGHTLY easier to deal with. But it can feel like time trials. TRUE TMS is used for other things but FDA and insurance coverage wise, depression is the thing. I am cautious with the extremely fast expanding list of what TMS does bc I think some of it’s BS but whatever works.
I know for me other things got more intense like anxiety at first (3wks) then self-harm got real big for a short while, very acute so short but very intense.
Hang in there. For me I just want the treatments to be over. I feel better-ish and that’s fine, it could get even better but I’m so sick of the treatments. Keep sticking with it.February 19, 2018 at 10:43 pm #31348
I appreciate the support. I have been holding in tears for hours now and will likely release them when I get in the car to go home. My legs are like burning with anxiety and crying is my only release at the moment.
I am approved for medical cannabis but that is hit or miss and I am usually too scared to try it. I just want to feel better.February 26, 2018 at 10:08 pm #31381
Hi stingray and others,
You guys aren’t alone by any means. It’s been a few weeks since you started your thread and a week since your last post. I hope you are feeling a little improvement by now, but even if you aren’t, it doesn’t mean the treatments aren’t helping you. There are way too many people in the same position as you, and most of them share your concerns. What happens if TMS doesn’t work for me? Where would that leave me? Will anything ever work for me? Those are common concerns. When you are facing a challenging treatment situation and you’re already depressed and anxious, it’s not unusual for people’s worries and expectations to become unrealistic. The statistics for the successful use of TMS to treat MDD are there. People that responded initially to SSRIs seem to be more successful with treatment than the people with TRD that did not respond to SSRI’s at all. TMS is being used off label to treat general anxiety disorder, bipolar depressive disorders, PTSD, ADHD, autism etc. It isn’t FDA approved for useage in treating these conditions, but studies are under way (and have been for a while). and the results are very promising.
My wife is going down the same road as you and others on this forum and I am with her in the passenger seat, trying to help. She has the same anxiety about going through this treatment and having it not work, regardless of what the statistics say. When you’re depressed and expect the worst in general, it’s not hard to imagine a treatment not working. My wife has had 9 treatments so far, so it’s way too early to tell how it’s going to work overall. Most people don’t see improvements until they are around the 20th treatment and some don’t see improvements until some time after the treatments are finished. Again, this is when you (in your depressed or emerging state see improvement), not when the improvement actually begin.
As with most successful depression treatments, improvements seem to begin with your ability to function—not your mood or outlook. Improvements in function aren’t always noticeable to the person receiving treatment, but they can be noticed by those that know the person well. If you ask my wife right now whether she is benefiting from her treatments, she would probably say no. At the same time, when I point out changes she does acknowledge there have been modest improvements over the first nine treatments. At this point, my wife has a little more energy. She has had some good moments when she has had natural smile and laugh that isn’t forced. We watched a comedy over the weekend and she laughed a couple of times and didn’t complain about how much the movie sucks. She is able to spend more time with the kids and can watch them for a couple of hours before she needs a break. These improvements are small and they are noticeable only relative to how badly she was doing before these treatments began. She is still very depressed and anxious. She still has panic attacks and crying spells, but they seem to be less frequent and last for shorter periods of time (in most cases). Instead of the attacks occurring daily (sometime more than one a day), she just went three days without an attack (but had one last night). I can also reason with her a little when she is in a panic attack, which was impossible to do a few weeks ago. These are material improvements, but nothing miraculous yet.
I think that’s how this is going to go… little, incremental improvements until one day she hits a plateau (which is hopefully at a point of remission). I will note though that, like you, my wife is having an off label version of the treatment. She is having the usual left side high frequency stimulation 5 days a week for six weeks, but twice a week (Mondays and Thursdays) she is also receiving a ketamine infusion during treatment. She also had 6 ketamine treatments alone (no TMS) before she began the TMS portion of treatment. The ketamine was helpful for my wife, but the effects didn’t last long. Combining ketamine with TMS seems to improve the performance of both treatments, but there isn’t a lot of research on this yet–but there have been a few limited clinical studies published with good results.February 26, 2018 at 10:31 pm #31382
I appreciate the response and support and I hope TMS works for your wife. The hopeless thoughts you mention are constantly going through my head. I have only had 16 treatments including today and I am already looking at what’s next as far as medications or something that could help me. It’s just really hard to be trapped in this train of thought for 24 hours a day. Plus, I may or may not have Lyme disease which is a huge wrench thrown into things since it’s so hard to test for and it would be late stage for me by now. Instead of just focusing on getting the TMS done and being hopeful that it will work, my mind goes to negative places and it’s so frustrating and disheartening. I truly want to believe that this will somehow work for me and the others on the forum. I am a bit disheartened that I haven’t felt any better thus far and I am wondering if my treatment protocol will work. I know 16 treatments isn’t a whole lot and I have only been treated on the right side instead of left, but I was hoping for something.
I only started the standard left-side treatments on Friday so I have only had two of them. My doctor’s approach was to start on the right side to treat my anxiety with low frequency pulses since my anxiety is so bad. Now we are coming back around to the left side to treat the depression I guess with bilateral treatments. So where does my brain and thought process go? The first thoughts were that this wouldn’t work because I won’t get enough left-side treatments now since we didn’t do them from the beginning. I know I am my own worst enemy but my brain just won’t stop going there.
Anyway, I am rooting for your wife. I hope she continues to show a gradual improvement.February 26, 2018 at 11:58 pm #31384
I know you “may or may not have Lyme Disease” and you’re waiting on the results, but why assume it’s a wrench thrown into your treatment for depression, Statistically, the chances are very good that you don’t have Lyme Disease, so try not assume a negative result from the blood work. Let’s not jump to any conclusions or assume the worst. Even if you do have Lyme Disease, it can be treated with antibiotics regardless of how advanced the disease may be. It’s not a cure, but it can help to prevent neurological damage and put the disease into remission (it’s a cure when it’s caught early, but still an effective treatment later on). Even though it is highly unlikely that you have LD, it would not be the end of the world.
In the life there are always going to be challenges and you can’t take them all on at once. If you’re in a pit of poisonous snakes, you can’t kill them all at once. The way to escape is to kill the snake that is closest to you…. then you kill the next closest snake and onward until they are all dead. Right now, you are waiting on the test for LD, but that’s not the snake directly in front of you. The depression is your closest snake, so let’s focus on that until you have reason to change priorities. Even if you have to get treatment for LD, that shouldn’t interfere with your treatment for depression (TMS or otherwise). Focus on one thing at a time.
As for the left side/right side TMS thing, if you need additional treatments and your treatments are being covered by insurance, the doctor can request that they cover additional treatments for you beyond the 30 treatments typically approved. It’s too early to worry about this not working since you have a lot of treatments remaining. In the end, you’ll get the number of treatments you need. For now, you just have to focus on trying to get better and killing off those nasty negative thoughts (and that closest snake). Things may suck right now, but they can and will get better.February 27, 2018 at 12:21 am #31385
It sounds like you may be somewhat familiar with Lyme disease and its co-infections. I’ve possibly had it since 1999 but the testing isn’t good. I grew up on Long Island which is a highly endemic area. The reason I am concerned with Lyme is because in its late stages, it can cause psychiatric symptoms which are treatment resistant because the underlying Lyme is causing it. Psychiatrists just try to treat the symptoms of anxiety/depression without getting to the root cause of Lyme in many cases. Lyme awareness is poor at best, especially where I live now, so it’s worrisome. I just wonder if I do have Lyme since that may need to be treated in order to get results with the anxiety and depression. Lyme is one of those diseases that is hard to detect and very elusive. The cdc has been slow to respond and that’s being kind. There are so many people out there who are needlessly suffering with physical and mental illness because the tests and treatments are inadequate. I think we will all be hearing more about Lyme as it’s thrown into the spotlight. Anyway, I am currently looking for a LLMD (Lyme literate medical doctor) in my area and we’ll take it from there I guess.
I appreciate your post and the analogy with the snakes. I know intellectually that you are spot on. I just wish my thought process and emotions would follow suit. It’s also good to know more tms treatments can be ordered by the doctor if needed. I know I should be focused on the closest snake right now which is tms, but my brain is already convinced that killing this snake means nothing as there will just be another snake to replace it. It’s amazing how our intellect as humans is such a double-edged sword. I really do appreciate your support. Thank you.February 28, 2018 at 9:25 pm #31394
I live on Long Island, so I am pretty familiar with LD. I know a bunch of people that have/had it, including some family members. I guess you’ve been doing your homework. People with CLD seem to be much more prone to depression and anxiety than the population in general, but the researchers aren’t sure if CLD is a direct neurological cause of depression/anxiety or the fact that people with untreated CLD tend to be in more pain and discomfort, which triggers the depression. I didn’t want to say anything about this in my last post because I didn’t want to trigger a negative thought loop for you–but obviously you know this already. In any case, that still doesn’t change the fact that it’s unlikely you have lyme disease. Looking on the bright side, CLD can be treated and controlled with antibiotics. In many cases, when CLD symptoms resolve and go into remission, the symptoms of depression also seem to resolve themselves–again, they aren’t sure why. Nevertheless, if you having an extended bout of depression , you’d still get the same treatments whether the cause of the depression were CLD or something else. None of this is pleasant, but it also shoudn’t feel like the end of the world. I have a good feeling this going to work out just fine for you. 🙂February 28, 2018 at 10:43 pm #31395
I am sorry to hear about your family members who have contracted LD. If caught early, it is easily treatable and doesn’t lead to many long-term problems. I have been researching Lyme since about 1999 when my issues started. They started with an irregular heartbeat called atrial fibrillation which is pretty rare for a healthy 17 year old to get at the time. One possibility is Lyme but the testing was and has been extremely poor. There are specialized labs which insurance doesn’t cover. Anyway, CLD does cause significant anxiety and depression as you state, and you make a good point as to whether or not it’s a direct cause. However, I have had so many other strange symptoms over the years from brain fog to unexplained ringing in the ears and so many other strange symptoms as well. There are different strains of CLD as well; some are prone to cause the more recognizable symptoms such as joint pain and lethargy, while neuro strains tend to affect the CNS and cause psychiatric problems as well.
Lyme is actually one the fastest growing diseases in the United States unfortunately and the CDCs refusal to recognize CLD is finally boiling over. There are hundreds of thousands of newly infected people each year and the testing is still horrible, especially considering up to 50% of the people don’t show the tell-tale “bullseye” rash. I do wonder what makes you think it’s unlikely that I have Lyme. I am not saying that I do, but considering its prevalence and the fact that I grew up in an endemic area, it’s a possibility. Treatment for Lyme varies from person to person. Long term antibiotics are used but the outcome is not always good, especially in late stage Lyme which affects the CNS tissues. Also, finding a competent doctor who actually understands how complex Lyme is, is another challenge altogether, especially here in Florida. I did use the ILADS service to track down a doctor but I am trying to focus on one thing at a time. My concern is that I won’t be able to treat the anxiety/depression I am having if Lyme is really the culprit until the Lyme is dealt with. It’s very frustrating and scary to say the least. Lyme is also one of the fastest growing causes of disability claims as well at this point.
Anyway, I did have a better day yesterday. During yesterday’s treatment, which was my 3rd bilateral and only the 3rd time getting the left side of my head treated, I felt a strange rush over my body. It was like I could feel something was unleashed in my head. It sounds strange, but it’s similar to the feeling I get when initializing SSRI treatment. After yesterday’s treatment, my anxiety seemed to subside quite a bit and I felt more hopeful. I was able to think of the future without as much dread. Unfortunately, it didn’t last long and I don’t feel well again today. The anxiety was back big time. This is what’s so hard about treatment – It’s hard to build up hope when it gets crushed almost immediately. Also, I feel like my case is more unique because of my anxiety. I honestly feel like if my anxiety was controlled, I would feel a lot better. It’s hard for me to tell if I am depressed. When I cry, it’s because I am so overwhelmed with anxiety that I feel utterly hopeless. This makes me wonder if the left side treatment will even help me since it’s primarily used for depression. I do answer all of the questions on the depression questionnaire, but I feel like anxiety can cause the same results as depression. I hope I am explaining this well. Also, I was responding to medications and stable on them until fairly recently but it took a while to get there. This is the first time I had SSRI poop-out or whatever it’s called. When the SSRIs work, they control my anxiety pretty well. I don’t know if TMS can do the same. I just wonder if I am getting the right treatment is all. I know I go around in circles with my thoughts but that is what my brain does currently. Tomorrow will be treatment 19 so I was hoping to feel more by now. I am just really scared that this isn’t working and I don’t know what to do next. Sorry for rambling. It’s just very disheartening to have a somewhat good day and then get thrown back down, not knowing if TMS is even doing anything.
Thank you for your support, Eric.February 28, 2018 at 10:51 pm #31396
Also – I am trying to tell myself that even though tomorrow is treatment 19, it will only be my 5th treatment for the left side of my brain. I just want something to show for it so we can get more life side treatments approved by insurance if needed. I hope we didn’t waste 14 right-side slow pulse treatments when I should have been bilateral from the beginning I guess.February 28, 2018 at 11:22 pm #31397
Keep up the good work.March 2, 2018 at 9:27 pm #31406
Regardless of the cause of your depression and anxiety, the treatment for depression and anxiety would be the same. Like I said earlier, kill the snake that’s closest to you. The “what if I don’t respond to treatment for CLD because I may have contracted it back in 1999” is one of those snakes on the other side of your proverbial room. You would need to go through 20 steps just to get to the point where that is a real thing to worry about. For now, focus on the problems that are right in front of you—the ones that you can actually try to do something about. The treatment went well for you the other day, so that’s something to feel good about.
One of the main themes I have been reading both in your thread and many others is the fear and disappointmet people seem to experience because they can’t tell if the treatment is working. The feel good one day and after the next treatment they feel horrible. This treatment is going to have up and downs–believe me when I say I am seeing those in my wife right now. She was doing great last week. She was pretty energized on monday, but the rest of the week has been pretty awful. This is just the way it goes with these treatments. Here’s an analogy:
Imagine you had a problem with your knee or back that caused you a lot of pain. You may need surgery to repair that problem and relief that pain. When you get out of surgery, you can expect to be in more pain that before you went in–because that’s the way this stuff tends to work. No one has ever gotten out of orthopedic surgery feeling pain free and and ready to run a marathon. Why should you expect a treatment for depression like TMS to be so different? Right now, you’re using a powerful magnet everyday to change the polarity of the neurons in your brain which stimulates them to awaken and create new pathways. Those pathways have to form and connections need to be made as part of the healing process. This takes some time and, considering that you are stimulating that part of your brain that effects your emotional responses, you should have some ups and downs until the connects form and your brain functions stabilize. In short, you can’t focus on day to day “changes” or moods your experiencing. You have to look at this as longer term healing process–as if you’re recovering from a physical injury (which, in a way, you are).
So, how do you know if the treatment is working and that you’re out of your depression? If you expect to be hit one day with a magic bolt of happiness, you have the wrong expectation. No one goes through TMS, ketamine or any other treatment and walks out of the doctor’s office with all the clouds permanently lifted, angels singing in their ears and beautifully people are cheering your name. This is all about ups and downs, which we hope will trend in a generally upward direction like a stock market tracker. In the end, emerging from depression does not mean reaching a point where you feel at peace and you have achieved zen. If you want that, you will need to join a Buddhist monastery and spend the rest of your life in meditation. Not having depression means that you get to experience a normal range of emotion, including happiness, stress, relaxation etc. TMS is not going to change your core personality or give you something you didn’t have before you were depressed–it will just take away the symptoms of depression.
When you do being to emerge, the signs will be subltle. You may still feel like you have a low mood, but you might find that you’re able to still get up and clean the house, pay the bills, run errands and generally function better. You might be able to go to a social event and you won’t be wracked with anxiety or staring at your watch ever five minutes waiting until you have been there long enough so that you can excuse yourself and go home to get in bed. Eventually, form (mood) will follow function. When you’re able to do more stuff and have more energy, you’ll find that you feel good about having some new abilities and improved function–even if you’re mood still isn’t great. Ultimately, you’re mood will come along for the ride and you’re start actually ‘feel” better and find that some activities are giving you joy again. You’ll still have good days and bad days because that’s what normal/healthy feels like.
Unfortunately, the marketing for mental health products including TMS, Ketamine and every drug ad on TV sells this idea that their product will bring you peace, zen, bliss and happiness. They create unrealistic expectations. Ideally, these treatments return you to YOUR non-depressed state. If you are a pessimist at heart and always were, TMS isn’t gong to turn you into an optimist. If you have are an introvert and have a shy nature, it’s not going to turn you into an extrovert that is the life of the party. What it will do is make you feel whole again–like the person you once actually were in the past before your depressive episode and not an idealized, perfect version of that person.
I really hope this helps!March 2, 2018 at 10:23 pm #31408
As always, your response is very thoughtful and thought provoking. I do wish the science behind Lyme Disease and the co-infections was better understood so treatments could better serve the sufferers, but it is out of my control at this point and I know that. It is one of those snakes across the room but it’s also a very long snake as it has attached its ugly self to every part of my thought process. I felt so hopeless last night when I was researching LLMDs in my area as I read about so many people suffering even after being diagnosed. It was such a sinking feeling of dread that words cannot describe it well enough. I do plan to address it by making an appointment and getting tested along with a clinical exam, but you are right, there is nothing else I can do. It’s just the thought of possibly not getting any relief until I am treated (if I am infected) that is insidious and scary.
You are indeed correct about the fear of not being able to be helped. It is a very hopeless feeling. I am sure you appreciate it as you see the struggle your wife is going through. I honestly don’t know if the treatments are doing anything and that is a hard pill to swallow. We added a medication before my remapping and I haven’t gotten bad enough after that to completely break down and cry like a baby, but other than that, not much has changed. I had my 20th treatment today (but only 6th left-side treatment) so I was just hoping for more. You are analogy with getting knee surgery is a good one, but it’s hard to compare the knee to a brain. Yes, the knee may hurt after surgery but I could deal with that as it’s localized to the knee and surround tissue. The problem with the brain is that the brain is essentially…me. If it’s injured, it has the ability to distort all of my thoughts and emotions and make life unbearable. Every thought, feeling, and judgment had to go through the brain. I hope that makes sense. Intellectually, I do understand it is a process like any other procedure. The problem with me is that feelings and emotions can override my thought process rather easily as the entire world is distorted because of anxiety and dread.
I truly do not expect this to suddenly cure me of my ills. It would be nice to be hit with a bolt of happiness though. I know it’s a process and I accept that. I just wish there was at least an indication it is working. My better day could simply be due to the fact that I was having a better day. If I could tell that there was a gradual trend upwards, it would make my life easier. When the medications worked for me I would feel it. The SSRI would kick in and then the trend was upward and recognizable. I am also a bit of an odd case because my anxiety is really what ills me. I don’t even know if I am depressed but we are trying the treatment anyway. For me, the symptoms of anxiety and depression seemed to be blurred into one line. As I mentioned previously, I do answer low on the depression questionnaire but anxiety could easily cause those same answers. I try to give my doctor the clearest picture possible through my descriptions as well. I do understand that TMS won’t make me “happy”. I would be happy being my old self though for sure. I think in order to truly be myself again I would need to come off all medications, but that is another snake in this pit I don’t want to antagonize right now.
Right now I am still able to function and work which I am thankful for. When my anxiety gets really bad though, it’s debilitating. Up until on went on the new medication last week, I was going down the path of not being able to work because I would get so anxious and overwhelmed, that I would be constantly crying for relief. I feel spaced out and tired, but it’s better than being so bad I could just cry. I am still knocking on wood that I don’t start crying again. I have had the type of anxiety before which was brought on by certain events. It is different this time and part of the reason why I am scared. It just happens regardless of what I am doing. They aren’t panic attacks either but an overwhelming feeling of anxiety, dread, hopelessness, and despair. It’s just brutal. My cognition is also terrible which another reason why I was considering Lyme and its coinfections. My brain feels like Swiss cheese. My short-term memory isn’t there and my problem solving is horrible. Yes, it could be from the anxiety or medications, but I am truly worried I have some form of dementia. I was supposed to get some neuro-psychiatric testing done but I was too acute to do so. It is just really scary to be fully aware that your brain isn’t working correctly. Anyway, I do hope that you are right in that my mood will eventually pick up. I do have a daily pattern where I wake up early with anxiety, it builds up and up, and then starts to settle some in the evening. It makes work extremely difficult since so much is expected of me during the day.
I do agree that the marketing is exaggerated for TMS. I am reminded of that everyday as I sit in the waiting room of the TMS center, staring at the brochures for TMS bragging about the remission rate with pictures of smiling people. I look at that damn chart that has the timeline of when people start to feel better and wonder why the hell I am not following it at treatment 20. That creates anxiety as well. Part of this illness is constantly comparing myself to others who don’t struggle with this. I will admit that I something get angry at happy people, not because they are happy, but because I am not and they are just reminders. Yes, TMS and other treatments won’t change my personality and I think that’s a good thing. We are who we are and that is fine.
Has your wife ever tried cannabis? I don’t know what the laws are like back on Long Island these days but here in Florida, you can get a medical permit. Certain people I know swear by it for depression and anxiety. It has been mixed for me and I haven’t used it in a long while.
Thank you for the support as alwaysMarch 6, 2018 at 11:33 pm #31412
I hope you’re hanging in there. Usually, anxiety and depression are like twin sisters, but it’s not always the case. I personally suffer from anxiety but not depression. In my case, thought, the anxiety is based on my fear for being constricted and not being able to breath comfortably. It’s part claustrophobia and part something else—call it my craziness.. It started out because I had serious problems with my sinuses that required multiple surgeries with some success, but the anxiety never left me. If I am in a stuffy room or just get some thought of being in a restricted space, I start to freak out. Klonopin helps, but it takes a little while to kick in. I have attacks while driving and I even had one this weekend when I was getting a massage—which is suppose to relax you, but I started to get an attack. I was able to do mindfulness exercises to prevent it from becoming a full blown attack, but sometimes even the mindfulness exercises can make things worse. My dad gets the same types of attacks too, but his are less frequent. I also take Adderall for ADD, which is known to cause anxiety–so that’s a contributing factor for me. I have tried cutting back significantly on my dosage, but it’s always a balancing act.
I do use CBC oil, which can be purchased legally anywhere. I think it helps with the anxiety a little, but wife says it does nothing for her. Hypothetically, I might use marijuana at night in small doses, along with a .5mg of klonopin, which helps me sleep comfortably and wake up the next day without any “hangover”. I would otherwise need 1 or 1.5mg of Klonopin, but I then I have trouble getting up the next day and it causes me to sleepwalk, which can be very scary. The last time I took 1.5mg of Klonopin, I had a dream that I was walking a long distance to the bathroom to pee. I had a quasi-emersion from my dream to find myself standing at the top of my stairs in my house starting to pee down the stairs and had to stop myself mid-stream!!! The prior time I walked into a door jam. The combination of marijuana (hypothetically of course) and .5mg of Klonopin seem to have the intended effect without the risky side effects (sleep walking is not fun or funny–you can really hurt yourself).
We have very limited access to real medical marijuana in NY and no clinics around us. Medical marijuana was signed into law in November, but actually getting clinics opened and getting prescriptions is going to take time. Of course, we can always get it the old fashioned way, but it doesn’t really help my wife at all–in fact, the last time we used it together it made things a lot worse. I suppose with the right strain, it can help, but we aren’t very sophisticated with these types of things yet.
In any case, just stick with the program. It may not be a “cure” for depression or anxiety, but it may make things a lot better and make other treatments more effective–like your old meds or therapy. Keep up the good work and know that our prayers are with you.
–EricMarch 7, 2018 at 6:08 pm #31416
I am hanging in there as best as I can. There is no noticeable improvement yet which is haunting me since I dwell on it so much. I see the doctor before my TMS session this afternoon so we’ll see what he says. I actually dread going to see him because I wish the news I had to tell him was better. I can’t get all the anxious thoughts out of my head and “what ifs”. That is one of the worst parts. I am convinced that something has to be causing this to be happening, whether it’s Lyme or something else. I have been having cognitive issues for about two years now and I have convinced myself it is some form of dementia which is really scary. I truly feel like I am a 35 year old guy who is dying from dementia and can’t be helped. As you can imagine, it’s a bad feeling to be truly convinced of something like this. I was supposed to get neuro-psychiatric testing but I was too acute to get a reliable result so we held off. The evaluation was ordered by my PDOC after explaining the brain fog I am in. Yes, I know it’s possible that this is all from my anxiety, but I just feel like something is off. My brain is like Swiss cheese or something.
I wonder if I am more like you in the sense that my anxiety is my primary cause for concern. I don’t know if I am depressed. As I mentioned earlier, anxiety can cause the same low answers on the depression questionnaire as depression does. It can also cause crying and lack of interest in things…etc. I just know that I am anxious. I don’t really sit there depressed as my mind is too busy with the anxious thoughts. Not to downplay your anxiety or anything like that, but at least you have pinpointed a cause for your anxiety. This can help you avoid situations that would be a trigger, or help you work through them at least. With my anxiety, anything I think about makes it work from having to shave, to thinking I have dementia. It’s like a sinking feeling of dread. I am not getting panic attacks at the moment (knock on wood), but I have had them in the past and they are horrible so I know how you feel. I don’t remember if you mentioned this or not, but do you see a therapist or practice CBT? I have an appointment with a therapist tomorrow but it sounds like therapy could be helpful to you based upon your triggers.
I have CBD oil as well but the kind from medical grade cannabis since I am licensed in my state. I don’t feel like it does much though and it’s expensive. I am not surprised your wife says it doesn’t do much. Sometimes people find CBD beneficial when used with a high THC based strain of cannabis and it provides the “entourage effect” in which the compounds work synergistically. It sounds like your hypothetical cannabis use helps which is a good thing. Sounds like klonopin hits you pretty hard based upon that dream of yours. The state I live in does not allow whole flower products yet. We have extracts which can be edibles or vaporized. The issue is that they are really potent for people who don’t use regularly like myself. Flower is supposed to be a much more even experience and smooth. The flower also contains CBD but the extracts we have available are made for high THC content. They do offer different ratio products like 1:1 but I haven’t experimented much. Back in November when this anxiety was more or less just beginning to become serious, I vaped an indica strain and had a really good experience. I kid you not when it felt like a switch was flipped in my head and I felt pretty damn good. I felt everything melt away and the things I was anxious over just weren’t a big deal. I slept well and was smiling and laughing. Unfortunately, it hasn’t been a consistent experience. Other times when using it, I will just feel a bit more out of it and not really get the good effects. I am also sensitive to the fact that THC increases my heart rate, something I am already aware of to begin with. I haven’t used it since beginning TMS treatment since I don’t want to mess with the motor threshold. I am also on some new medications and I am not sure if it’s okay. If TMS doesn’t pan out, which seems to be the direction I am going, I will try cannabis again. If you do hypothetically try it again with your wife, try micro-dosing it. Take a small 2-second draw and call it quits. Some people don’t need much.
I am doing my best to stick with the program even with the lack of results. It’s hard. I accept that it may not be a cure for my issues, I was hoping it would at least help. It’s a shame to make such a big commitment and have it fail. The thought of “what the hell am I gonna do next?” racks my mind all day. Do I go on a TCA? Do I try a previous SSRI? Do I cross-taper? With the withdrawals of my current med be debilitating? Will I be able to continue working? Will I end up in disability? Those and many others are thoughts constantly zipping through my head.March 12, 2018 at 5:32 pm #33494
Just a quick update. I met with the TMS doctor last Wednesday and he changed my protocol again. He wants to focus totally on the right side because of my obsessive ruminations. He wants to try to calm that part of my brain. Anyway, we are doing the right-side treatment for 50 minutes with one pulse per second, and then my right orbital area above my eye for 33 minutes. These are also one pulse per second. It’s off the label treatment and I commend my doctor for trying, but I am not feeling any better. I think this is my last week of treatments everyday. I had a decent day on Friday and Sunday wasn’t so bad, but today sucks. I am just so sad and hopeless. I am trying to hold back the tears so I can stay at work. Today I am more hopeless than anxious it seems. My last drug combination did me well for over five years. I think such sad thoughts like if I had my reprieve so I could move, meet my current girlfriend, and make good memories before it was taken away from me. Now I tend to dwell on those good memories and feel like I will never be that person again. This is really brutal.
I hope you guys are hanging in there and doing better.March 12, 2018 at 6:34 pm #33495
My wife has No. 18 scheduled for today, but it’s been a rough weekend. She seemed to be doing ok at the end of last week and even Saturday, but she crashed yesterday. I think she is going through the dip. She was nasty to me for a good part of they day and spent a lot of time this weekend in bed, both Saturday and Sunday. Sunday night she made a few nasty comments to me in front of the kids and just got pissed. I told her that I understood she was having a bad day, but that taking out her frustration on me isn’t the answer. It spiraled down from there until she was crying hysterically saying how she doesn’t want to wake up in the morning and how we would all be better off without her. She feels hopeless like there’s a black hole inside her brain and it’s never going to go away. This morning she couldn’t get up to go to work and called in sick. I am really worried about her. I called her a little while ago and she was still in bed and complaining about having a headache. I know this will get better and it’s part of the process but it doesn’t make it any easier. I haven’t been able to focus at work today and I just feel really crappy and worried. I just hope she goes to the doctor and feels a little better afterwards.
On the positive side, my wife’s p-doc did a a cheek swab on her on Friday and sent it in to a lab for genomic testing to determine a more effective course of drug treatment for her. I did some research on these tests over the weekend and it’s pretty interesting tech. It can tell you which drugs are most likely to work for your, which you need to be careful (and to what degree) and which to stay away from. I think it can take a lot of the guess work out of the drug prescription process. Maybe its’ something worth mentioning to your p-doc?
–EMarch 12, 2018 at 7:22 pm #33496
I am truly sorry to hear that your wife has crashed a bit and I hope it’s the dip like so many others here have experienced. I am sorry to hear that you must bear the brunt of her illness and that can’t be easy, but hopefully there is light the end of the tunnel for both of you. It sounds like you handled it as best as you could given the circumstances. I know how hard it must be for you to practice patience, but I know that you understand this is an illness that makes its victim say and do things they wouldn’t normally do and it’s frustrating. I understand the thoughts of hopelessness she is going through and I feel for her. Your worry is understandable but not easy I am sure. Just keep texting her and support her as best as you can. I can’t imagine the toll this must take on you. One of the reasons I really hate anxiety/depression is because of the splash damage that occurs to others in its radius.
My TMS doctor actually tested me with the test you are referring to at the beginning of treatment. I am not sure how accurate it is as it has Paxil listed for me as a medication I should avoid, but it was one of the drugs that worked best for me when I was on it years ago before coming off. When I tried to go back on it years after, it was like I was stuck in a constant state of withdrawal from it. Anyway, I have the test at home. I may show it to my primary psychiatrist but I don’t think he really follows that stuff. I may seek a new psychiatrist actually. My TMS psychiatrist doesn’t do medication therapy but maybe he knows another doctor who does. I have already accepted that TMS isn’t really doing much for me but I am going to finish the treatments at this point and then I guess it’s medications again. While I would rather not take a medication, if it works, I am fine with that. I am just nervous about the process as switching these medications only makes a bad situation worse.
Sending thoughts to your family. Hang in there.March 13, 2018 at 6:03 pm #33497
As for her actions towards me, I have been down this road before and when things get bad for her she takes it out on me. I totally understand how depression can warp a person’s perception and actions, but I will not be her whipping boy. What I normally do when she gets like this is just disengage from her and leave the room rather than fight with her. This weekend, it was the fact that I was disengaging and leaving that caused her to escalate. I told her if you’re going to treat met like sh!t and I am just going to leave you alone. It wasn’t rational behavior on her part, but I have definitely seen it before. In any case, it sometimes has to get this bad for her to acknowledge there’s a problem and address it. She told her doctor yesterday about what happened and how she was feeling and he upped her dose of ketamine and I am going to guess that he’s probably upping the intensity of the TMS–which is what i wanted to talk to you about.
First off, many people that respond to TMS and do very well on it, don’t necessarily get to full remission after the FDA prescribed 36 treatments. Some people need more—50, 70 etc., Also, some people need higher frequency and longer duration treatments than the typical 37.5 minutes. If you’re experiencing some, but not full benefit, from TMS, your doc can apply to your insurance carrier for approval for additional treatments–which they will generally approve.
Second, as for the genetic testing, getting a red or yellow mark for a certain drug doesn’t mean it shouldn’t be used, only that there are factors that my require additional observation. If, for example, your a slow metabolizer for a certain drug, you doctor might prescribe a lower than normal dosage (or a higher than normal if you’re a very fast metabolizer). If the doctor is aware of your genetic disposition in advance, it can save you a lot of time and bad experiences with doctors having to spend months tweaking the dosage for you and there may be other meds out there that are better for you (particularly if you have had issues tolerating certain meds in the past). My wife’s biggest complaint with past doctors is that they never seemed to know what they were doing and it always felt like a guessing game to her–which it was. These tests can help reduce the amount of guessing required on several levels. It won’t get rid of the guesswork entirely, but if it could reduce the time it takes to find an effective combination down from 2 years to 3 months for many people. I also think those tests might be helpful when it comes time to fight with insurance carriers for novel treatments and medications, particularly if you have a lab test (which they will pay for) that helps to prove you can’t tolerate the cheap crap they want your doc to prescribe to you. There’s some new meds that will be coming out soon and the insurance companies aren’t going to jump to cover them without proof that other meds failed or can’t be tolerated.
Most of “us” have probably had enough years of really bad experiences to convince a carrier to cover us on the new drugs so it might not be such a big deal for “us”, but think of the person that just started off on this wonderful experience–who is genetically treatment resistant. This could save them a whole lot of time and suffering so they can get the care they need without having to try three or four different meds over the course of a year or two that only give them side effects and no benefits. Anyway, these genetic tests are constantly being improved and updated. In a couple of years it will really make a difference.
Anyway, keep up the good work and try to keep your spirits up too!
–EricMarch 13, 2018 at 7:38 pm #33498
I agree with you that you have to be able to draw a line in the sand. It sounds like you have already done that and stand by it which is a good thing in my opinion. I am glad she was able to realize her behavior was irrational and express it to the doctor. I hope the increased dose of ketamine works.
I have already spoke to my doctor about getting an approval for more treatments. He did mention that sometimes he can get an approval for more treatments if there is an improvement. However, I haven’t shown any signs of improvement really. My anxiety and depression scores remain in the same spot for the most part. He also said, United Healthcare, which is my insurance carrier, tends not to approve the additional treatments. Plus, I am also in a unique situation. I haven’t been treated with the standard FDA protocol like your wife. He went off-label with me to treat my anxiety so I don’t really know what would have happened if we did the left-side treatment only. It gives me anxiety because now I don’t know if we’ll ever know if TMS will work for me. I had only about 6 left-side treatments or something like that. He then removed the left-side treatment and we now do the right-side and right-side orbital areas. That is supposedly where the “negative reward” network lies.
You are correct about the medication genetic testing. It was just kind of amusing to see Paxil on there in red after it helped me in the past. Your wife is correct that the guessing game of medications truly sucks. Now that TMS doesn’t seem to be working for me, I am anxious about going down the path again. Switching SSRI’s in the same class is bad enough, but now I don’t know what the doctors will want to try next. I have never been switched from an SSRI to a TCA for example. I don’t remember if the TCA class of antidepressants is even on the results of the test I received. Anyway, as bad as I am now, I know that switching medications can make things that much worse and I am truly scared. This is the first time a medication has pooped out on me, but it took a long time to find something that worked and now it’s failing. It’s such a terrible feeling for me. I don’t know how I am going to make it through it. I know it hasn’t happened yet, but I think about it constantly. Will I be able to work? Will I need to go to a hospital (I have never been in a hospital for mental health)? In the past, I have been the one to research medications and make suggestions to the doctors which is scary. They just don’t understand these medications. I am in such a bad spot and the TMS not working has really just smashed any hopes I had for it. I just want the treatments to be over at this point.
I am trying to keep my spirits up but yesterday and today have been brutal. I spend so much energy trying to hold the tears back so I can stay at work. I am scared as to what comes next for someone like me. I feel hopeless. I hope your wife’s dip ends soon and TMS begins to help her.March 14, 2018 at 6:07 pm #33503
Don’t write off the TMS just yet. First off, if you and your doctor think you could benefit from more treatments, the request for approval can be written so you can get that approval. My wife is technical off the FDA protocol too–since she is getting both TMS and Ketamine. The doctor doesn’t have to explain how each treatment was administered in the request for approval—only that the prescribed treatment were administered and there has been signs of improvement. Obviously, it isn’t fully effective or you wouldn’t need more treatments. I just wouldn’t give up on this so fast. If it can work for you, it’s a much better alternative than meds.
–EMarch 14, 2018 at 7:44 pm #33504
I haven’t totally written off TMS yet as I am still going to the appointments, but it’s late in the game for me. This is my last full week and next week begins the tapering process. When the time comes, I will certainly speak with my doctor about getting a treatment extension. A part of me feels like he was frustrated that I wasn’t making any progress or that I have some hypochondriacal tendencies so he said that my insurance carrier wouldn’t cover it. Maybe he thinks my issues can’t be treated by TMS – I don’t know. I ended up losing it yesterday and crying out of anxiety and hopelessness. I was thinking of how I wouldn’t get better and how even switching medications will be a nightmare and if I should do an intensive outpatient program. I am a bit better today, but I know it could come on at any time. I see my new therapist for the second time today.
I think your wife is still on the approved FDA protocol since she’s receiving the left-side treatment. I don’t think the FDA specifies that TMS treatments are contraindicted when ketamine is introduced. I am still on all of my medications that I was on at the beginning of treatment plus an additional one. I will discuss further treatment with my doctor though if there is any sign of improvement.
I wouldn’t say I was giving up on TMS so fast. I only have like 7 or 8 treatments left which I intend to finish, but I feel like I have given it a chance so far. I do agree that if TMS works, I would much prefer it to medications. Unfortunately, I don’t seem to get much of a choice in the matter. If TMS doesn’t work, I will have to start messing around with medications again, maybe try a TCA since I have never been on one. I would rather deal with the side-effects than live like this. I am still on all my medications now anyway. Just coming off of them would be hell on Earth at this point, well for two of them anyway. It scares the crap out of me. I am actually looking for a new psychiatrist based on some feedback from the psychiatrist who does my TMS. I am trying to find one who knows what he/she is doing and not rely on the patient for ideas.
Anyway, I am rambling. I hope your wife is doing better today and you as well.March 14, 2018 at 10:03 pm #33505
The doctor could have given you left right treatment at the same time—on hour long treatment zapping both sides of the brain and it would still only cost him the same $100 fee to neurostar. At the same time, maybe you just needed it all on one side and that splitting the different undercut the effectiveness of the treatment. I think you need to discuss this with the doctor and if you need more treatments he should ask for them because it was his decision how he chose to administer the treatment to you. He can’t just cut you loose because his off label use of your insurance approved treatments didn’t have the desired effect in the treatment allotted. In any case, you haven’t had enough left side treatments to know whether TMS is the answer, even with the remaining 8 you have left. Hence, the reason I think you haven’t been able to give TMS a fair shot.
In any case, there are other options out there besides the usual combos of meds. Ketamine is a good option and maybe better for you than TMS. If that’s not in the cards and TMS isn’t getting it done, there are some new ketamine based meds that are nearing FDA approval, including esketamine which will be out sometime later this year.
Another outside the box option you may want to look into is tDCS (transcranial direct current stimulation). You are essentially stimulating the same region with tDCS as you would with TMS using a low voltage electro current for 20 minutes a day. There’s plenty of studies on it, but for the moment its not FDA approved. You can buy a tDCS device and a book of montages which tell you how to place the electrodes on your head to treat anxiety and depression. It can used for other things too. I know that the navy and airforce use this to help improve pilot performance during training. They are using fancier machines (obviously), but the principals are the same. If you do some google searches and search youtube, you’ll find a lot of stuff out there on it. Here’s one news story:https://youtu.be/P68I4rTZo04 In my research, the best device appears to be this one: https://www.amazon.com/ApeX-Type-18V-Accessories-included/dp/B00YG4D6UW/ref=lp_2528940011_1_7?srs=2528940011&ie=UTF8&qid=1521064913&sr=8-7 I am thinking of trying it out to treat my ADD since I don’t like the side effects from my meds.
–EMarch 14, 2018 at 10:47 pm #33506
The doctor couldn’t really do left side treatments as well since he was doing 50 minutes of right side treatment. When we did do the left-side treatment, he cut down the right-side treatments length of time. Now he is doing two different areas of the right-side based on my symptoms. While TMS is approved only for the left-side, many doctors treat the right side with low frequency pulses as studies have shown it’s effective for depression. Basically, the doctor wanted to destimulate parts of my brain instead of stimulating them. TMS can still be successful even when not used on the left-side which is the point I guess and what the doctor was going for. I could ask him to get more left-side treatments I guess but when I asked him last time, he said the slow pulsed right side treatments are very effective against depression but also aid in easing anxiety. I know you didn’t mean it, but when I read your post, my stomach sank with anxiety and dread. Now I am wondering if I have lost my chance with TMS because I didn’t get enough left side treatments. I am the patient and I trust the doctor to make these decisions and now I will always be wondering if it could have worked. He stopped the left side treatments because of how obsessive my thoughts and ruminations are and chose to focus on the areas of the brain associated with them.
Thank you for the information on Ketamine. I guess I could try that but I am kind of scared of that and based on your posts, the effectiveness doesn’t seem to last. Since I have responded to medications in the past, I am wondering if I should just stick with them for now. I don’t really know. I will look into the tDCS as well.
ThanksMarch 15, 2018 at 11:00 pm #33507
I think you misunderstood my post. I am not second guessing your doctor, but there’s a game that you guys have to play with the insurance company. They won’t cover any investigational treatments, so you have to go by the book with them. He just has to tell them that you had X number of treatment and you are showing some benefit, but more treatments are necessary in his medical opinion. For all you know, this treatment is working and will work for you, you just have felt the benefits yet. In short, you can’t say, I got mostly right side and need more left side—you just omit the specifics unless asked (and then you say what you need to say to get the treatments approved).
As for ketamine, I am not knocking it all. It does help and for some people, it’s the only thing that helps them. When TMS is successful it can result in a lasting remission which can extend for years with a handful of maintenance treatments along the way. That’s almost never the case with ketamine. If ketamine works well for you, you can expect that you’ll need to go back once every 4 to 6 weeks for a top off after the initial six treatments. Some people can go longer and some people need it every week. That’s not an ideal solution, but it may be the one that works best for you. It certainly worth a try and if you can find a doctor that will administer ketamine via intra-muscular injection instead of IV, it’s not that expensive (relatively speaking). Also, while ketamine isn’t covered by insurance at the moment, Jansen’s Esketamine intranasal spray has completed phase III testing and the rumors are the results were excellent. J&J will be submitting it for FDA approval soon and it will probably be on the market before the end of the year (maybe sooner). If you’re still feeling crappy a month after TMS is over, I would definitely give ketamine a try and you can transition over to Esketamine, which will be covered by insurance, once it’s approved.
Ketamine has helped my wife quite a bit, but it hasn’t been a magic wand that waved the depression away. It did make things a lot more tolerable for her and it does help a LOT of people. My wife is still getting the ketamine shots. Having them administering while she is getting TMS sort of ruins the experience. When she got them on their own and was just able to zone out without a woodpecker picking at her brain, she enjoyed the experience quite a bit and looked forward to going to her treatments.
I know it’s hard when you feel like total crap to see a brighter future, but that’s depression whispering in your ears. There are a lot of things out there left for you to try—seriously. Depression treatment research was pretty dead for a while, but there’s a now a lot of stuff in the pipeline. If rTMS didn’t work for your, there’s also dTMS, which has helped a lot of people that failed on rTMS. There’s also theta wave treatments that are coming out and a bunch of new drugs in the pipeline that work on the glutamate system–similar to ketamine. Also there’s promising work being done on psilocybin, which is also showing a lot of promise. In addition to Esketamine (which is really exciting), there’s a flurry of other new meds, unique meds and treatments that will be on the market within the 18-24 months and other will follow.
I hope TMS does the trick for your, but if it doesn’t, there are other good options out there. This is not your LAST chance by any means. I see plenty of people say things like that but it’s just negative depression talk. It seems real to you, but it’s BS. You’re going to be ok, but you need to keep your head in the game. Remember though, lots of p-docs are very conservative and they are stuck in their playbook. They don’t like to change their ways or try new things. Why do they through darts at a board, when they could do genetic screening to narrow the medical option right from the outset? Unfortunately, I am convinced that these doctors rely on a business model that requires patients to constantly see them every 4 to 6 weeks or more, so the dart board approach is good business for them. You need to check the psychiatry journals and get comfortable with their language so you are on top of the situation and aren’t rely entirely on a doctor to tell you what’s best for you.
Unfortunately, I have had to go through an experience with my sister who had a rare form of non-hodgkin’s lymphoma and the treatment the first oncologist she met with was pushing was based on old data and wasn’t the latest and greatest. We did a lot of homework and we questioned the doctor and he didn’t have great answers for us–since it seemed he didn’t do his homework because he was a a lazy @sshole. We went to two other doctors before we found one that understood what we were talking about and gave a good feeling that she was in good hands. Because we were our own advocates, she’s alive and well today—cancer free for 2 years. Depression is psychiatric cancer and you need to always be your own advocate. Finding the spirit to fight this illness (and that’s what it is), is half the battle.
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